Thursday, June 23, 2016

One Year Later

     I always knew they would come back, but I didn't think it would be so soon. It was one year ago today that I opened my eyes and realized my cheek was resting on the warm cement in our back yard. There was no question in my mind what had happened because I remembered the music...Stevie Wonder singing in my ear...followed by the memory of that same song being sung to me when I was a little girl in elementary school.
     My mind had traveled back there, but my body had remained stuck in 2015. It was the same feeling as always, but deep enough to make me go unconscious on the sidewalk. I treated it as I had the last one in 2013, like a fluke, something that had happened because my mind and body were stressed out.
     I could never have guessed the journey that was ahead of me over the next nine months or the way it would change me and how I view my unique condition and myself. Like that seizure in 2013, I thought it was a one-time occurrence, a breakthrough seizure not to be repeated.
     There were only two really bad parts to the many months of active seizing, the car wreck the following week and the reaction I had to that awful drug. When you lose consciousness while driving, the seconds before and after opening your eyes again are terrifying because you don't know if you hurt anyone else.
     It still scares me to remember that I almost had a passenger last June when I was driving down to visit my son in Richmond, and it's hard to describe the intense wave of relief that washed over me when the lady who stopped to help assured me that no, I hadn't driven my car into anyone else's.
     When I called my husband to tell him what had happened, I felt guilty, like I had done something bad on purpose. That's how it is with epilepsy; you are embarrassed even though it isn't your fault.
     Before my seizures came back, I thought there were oodles of new drugs to choose from, but now I know my choices are limited. After going out of my mind on Fycompa, I'm even more wary of the chemicals available to keep my brain from doing its weird little thing.
     The drugs to treat my disease are much more frightening than the illness itself, or at least the version I have.
     Since last June, I've done quite a bit of research online, searching for others with the same seizure type as me. I recently found a woman who described hers as "psychic seizures" and said they had changed her way of thinking from the person she was before.
     At last, I thought I had found someone else like me, but then I kept reading. She had had enough of her "psychic seizures" and wanted them to go away for good. I stopped reading and went back to embracing my freakishness.
     I have made a lot of new online friends, other epileptics who have "it" much worse than I do or whose children have epilepsy syndromes. People whose seizures are under control don't talk, write or blog about it because of the stigma associated with epilepsy and because it really isn't on your mind much when a couple of pills a day keep it under control.
     All I hafta do is look at some of my seizure videos to remind myself how hard I try to hide it. The ones I filmed while outside in plain view of my neighbors look different than the others; my eyes dart around to see if anyone is witnessing my weirdness.
     I had more than 150 seizures before the Depakote Sprinkle made them go away. Only once did I do something I had never done before, and that is try to go deeper into the seizure. I'm not sure what I was thinking at the time.
     Usually, it just happens, and I wait until it's over. If I'm in a public place, I try to look normal, whatever that really means. And if, God forbid, I happen to be behind the wheel of a car, I fight it with all of my being.
     But that one time last winter, I was in my basement when the aura came over me and I sat down on the couch. It was a safe place with nobody else there, and I decided to give in to the experience. As usual, I was going back in time.
     The Brady Bunch was on my mind, which I watched in reruns every day after school when I was so young that my homework was easy enough to do in front of the television.
     There was enough warning for me to film the entire seizure, which felt like it lasted a minute or so. I was surprised and a little scared when I looked down at my phone afterward to find that I had been out of it for seven and a half minutes.
     The video isn't very different from the other ones, except my eyes are fixed for a much longer time and I'm blinking a lot more often. I didn't come out of it with any particular memory of where I had been during that time.
     Like I said, I'm not sure what prompted me to try and "seize deeper" than usual, but it's an experiment I won't be repeating.
     In an ideal world, I would be able to control my seizures at will, without medication. In times of stress or when I needed an escape, I would simply will myself into that other state of mind, long enough to come back with my spirits lifted but not long enough to damage my brain.
     That isn't an option at this time in this world, so I will keep taking my meds twice a day and hope they continue to work because even though I always knew my seizures would come back, I wasn't ready for it to be last June.

Thursday, May 5, 2016

A Shockingly Rotten Way to treat Humans

     The following letter was obtained through the Freedom of Information Act. I'm happy to report that the FDA is moving forward with plans to ban the use of the electrical shock devices discussed in the letter. The Judge Rotenberg Center in Canton, Massachusetts is the only place in the United States where such devices are used.
     It "serves" children and adults with developmental, behavioral and emotional disabilities and defends the shock-treatments as being more humane than the use of psychotropic drugs. Some of the children and adults wearing shock devices at the center have autism.
     Please remember that one-third of people with autism also have epilepsy, so I assume there are people at the JRC who are repeatedly shocked while having seizures for behavior that is directly connected to epilepsy. The shocks would then lower their seizure thresholds, increase anxiety and create an endless loop of torture.
     On Page 5 of the letter, Glenda Crookes describes psychotropic drugs as a form of chemical restraint that would leave JRC residents in a semi-comatose state. Unfortunately, the 40 to 50 residents currently being shocked had no choice in deciding whether they would rather live in a highly sedated state or one in which they are constantly in fear of when the next electrical current will flood through their bodies.
      That's because the people wearing shock devices are placed at the center by their parents. People who call themselves physicians come up with the "treatment plan" for each individual. I'm not sure if those are doctors of philosophy or actual medical doctors who supposedly take an oath to do no harm.
      Many of the side-effects of antipsychotic medications listed on Page 5 can also be found on prescription inserts for commonly prescribed antidepressants, sleeping pills and painkillers. Weight gain, sexual dysfunction, dependence and sedation are a few examples. The only difference in Crookes' description is the addition of select adjectives, such as "severe," "major," "acute," and "sudden." I may lack the computer savvy to scan and present the letter in a pretty format, but it isn't beyond my skills to spot someone playing with words to her own advantage. 
     Reference notes are included as a reminder that people who feel the need to defend their actions often try to spread the blame.
     Administrators at the JRC consider it more humane to attach a shock device to someone's forearm, upper arm, upper thigh, calf, torso/stomach, palms of hands, soles of feet and buttocks than to administer medication that might alleviate the drive to harm oneself. 
    This has resulted in 45 to 50 individuals being the only people in the United States to have to endure this type of treatment on a daily basis for whatever behavior the center deems inappropriate. Every other residential treatment facility in the country uses "treatments" that are not so shocking.
     Thank you to the FDA for finally calling an end to this brutality. I hope the entire center gets shut down and everyone who defends it stripped of their license to practice elsewhere.















Wednesday, May 4, 2016

All in my Head

     I took a copy of the article about ecstatic seizures to my doctor's appointment Monday and now have added my current doc to the short list of people I trust. He's the same one I walked out on in December, when I decided to seek out an epileptologist at Walter Reed.
     The reason I walked out in December had more to do with frustration and being hit with too much information at once than it did with him. Also, I wanted to see what my seizures were like with no medication at all, if it would be possible to live my life without any anticonvulsants in my system, like I did before I was diagnosed.
     Two months of seizing throughout the day and being awake much of the night convinced me to end my drug holiday but I did so with the wrong drug, at least for me. I hope for the sake of others that Fycompa (Parampanel) actually does prove to be a promising treatment for people whose seizures do not respond to older drugs.
     For me, however, it was a nightmare I wish I could forget but can't. That's how my mind seems to work; I remember the really good times and really bad times while everything else jumbles together into one gray blur.
     My doc at Fort Belvoir decided to increase my  dosage of Depakote sprinkles. My labs showed my level is at 44; therapeutic is between 50 and 100. For years, it didn't matter that my levels were in the 40s because I wasn't having seizures, but now we are being more careful.
     It doesn't scare me to increase the Depakote because I was on too high of a dose way back in 1989 and didn't even know it until someone from the lab called me one night and told me. On Monday, I told my doc, "You know it's serious when the lab people actually pick up the phone and call you."
     I don't remember feeling any different back then, when my levels were so high, except my then-boyfriend, Ron, sometimes pointed out how tired I was. My job at the time was demanding, as I was reporter/photographer/layout person for a small newspaper in Pennsylvania.
     Any exhaustion he noticed was probably due to the stress of trying to fill so many roles at work and live on my own for the first time in what seemed like a foreign but beautiful land. My arthritis was a bigger concern to me then than my seizures, with my knees all swollen and achy much of the time.
     On Monday, I had the chance to explain to Dr. O that my seizures are literally "all within my mind" and don't involve convulsions or tremors. I also told him that I haven't been able to find anyone like me despite connecting with lots of other epileptics on the Internet.
     I told him how my seizures make me feel, that it's an almost religious experience sometimes and that no drug has ever made me feel that way. He asked about hallucinations, and I said no, I don't hear or see things when I'm seizing.
     I even described my vivid dream life, how I wake up in the morning with stories to tell my family about the weird adventures I had the night before. He asked if I dream in color, and I said yes and that sometimes, I even smell things in my dreams.
     Last month, when I finally started sleeping again, I had a dream that was so intense and haunting, I was compelled to draw the unique symbol that was in it. That was the "smell dream," with the distinct scent of blood. My son, Tommy, said the drawing reminded him of  the DHARMA Initiative symbol from Lost.
     "Everyone else wants to be cured," I told Dr. O. "But I can't imagine not being able to go back there again, if I wanted. It feels like heaven."
     It was the first time I've actually used that word to describe my seizures, and I was a little surprised to hear it come from my own mouth. He didn't look at me like I was crazy or refer me back to behavioral health. Instead, he said he might be calling me with more questions.
     That's why I added Dr. O to my short list. He did something most doctors don't seem to have the time to do...listen to me.